THE VIRGINIA MEMORY PROJECT: AN INNOVATIVE SERVICE AND EPIDEMIOLOGICAL BRAIN HEALTH REGISTRY

Abstract The Virginia Memory Project (VMP) is a statewide memory loss and caregiving needs registry in Virginia, United States. The VMP was launched in June of 2022 and supports statewide surveillance efforts via expanding the BRFSS (Behavioral Risk Factor Surveillance System) memory loss and caregiving modules via a digitized, mobile-capable online survey. In addition to collecting BRFSS data, the VMP partners with regional community brain health organizations to support respondents in getting connected to brain health and caregiving services. The VMP model is innovative because it combines a service and epidemiological registry to support improved resource allocation and decision-making in Statewide dementia care planning. It also provides a pathway for caregiving and memory loss services. In the pilot period of the VMP, there were 138 respondents, with a median age of 61, mean=58, range=18-100, and most respondents identified as White 65% (n=99), with smaller proportions of Black/AA, 16.7% (n=22), and Asian 5.3% (n=7). 96.2% of respondents were non-Hispanic. Most respondents were married (n=66, 50.4%) with no children in the home (77.9%), and 26.7% (n=35) provided contact information for potential brain health or caregiving services. For respondents who completed the memory loss module, 33% (n=26) reported memory loss or confusion worsening over the last year, but only 60% (n=15) had discussed symptoms with a healthcare professional. 33.3% (n=24) reported having caregiving responsibilities. The VMP increases brain health surveillance capacity in Virginia and represents an innovative pathway between a state department of health, a university data registry, and a community service provider.

Our objective is to assess the utility of real-world sleep to discriminate activities of daily living (ADL) decline in Alzheimer's disease (AD).ADL decline warns of dementia and disability.Improved understanding of how sleep indexes ADL decline provides a platform for early monitoring and intervention to slow AD disability and progression.Fiftyseven impaired (mean age =76.7 years; mild cognitive impairment [MCI]: N=50, AD: N=7) and 30 unimpaired (mean age = 73.6 years) subjects participated.Demographics and the Dependence Scale (DS) were collected.The DS evaluated ADL decline from partner (e.g., spouse) report.The subject's sleep was monitored for 3-months (N = 6,336 total days) using wrist-worn actigraphy and validated with sleep diaries.Sleep dysfunction was estimated using means and standard deviations (SD) of total sleep time, sleep latency, sleep efficiency, wakefulness after sleep onset (WASO), and awakening count.Logistic regression--adjusting for age, gender, and education--ranked the utility of sleep dysfunctions to discriminate ADL decline.Forty-six subjects (impaired: N=38, unimpaired: N=8) showed ADL decline (DS > 0).WASO variability (SD; b = 1.66, p < 0.001) and mean awakening count (b = -0.98,p = 0.003) best discriminated ADL decline.Sleep duration did not discriminate ADL decline.In line with prior literature, results underscore the role of sleep disturbances over duration in ADL decline and AD progression.Nightly awakenings show key clinical importance for real-world monitoring of AD-related disability risk.Further research may investigate the specificity and longitudinal reliability of sleep dysfunction to discriminate individual AD progression profiles.The Virginia Memory Project (VMP) is a statewide memory loss and caregiving needs registry in Virginia, United States.The VMP was launched in June of 2022 and supports statewide surveillance efforts via expanding the BRFSS (Behavioral Risk Factor Surveillance System) memory loss and caregiving modules via a digitized, mobile-capable online survey.In addition to collecting BRFSS data, the VMP partners with regional community brain health organizations to support respondents in getting connected to brain health and caregiving services.The VMP model is innovative because it combines a service and epidemiological registry to support improved resource allocation and decision-making in Statewide dementia care planning.It also provides a pathway for caregiving and memory loss services.In the pilot period of the VMP, there were 138 respondents, with a median age of 61, mean=58, range=18-100, and most respondents identified as White 65% (n=99), with smaller proportions of Black/AA, 16.7% (n=22), and Asian 5.3% (n=7).96.2% of respondents were non-Hispanic.Most respondents were married (n=66, 50.4%) with no children in the home (77.9%), and 26.7% (n=35) provided contact information for potential brain health or caregiving services.For respondents who completed the memory loss module, 33% (n=26) reported memory loss or confusion worsening over the last year, but only 60% (n=15) had discussed symptoms with a healthcare professional.33.3% (n=24) reported having caregiving responsibilities.The VMP increases brain health surveillance capacity in Virginia and represents an innovative pathway between a state department of health, a university data registry, and a community service provider.
LifeBio Brain, a prototype cognitive testing mobile application.We established baseline cognitive performance in volunteers from Brown University's Geriatric Clinic using the Saint Louis University Mental Status (SLUMS).We asked volunteers to use the LifeBio Brain app at home on an iPad twice daily for 10 times, for about 15 minutes each time, followed by completion of a 10-question System Usability Scale on satisfaction that assesses the app and its ease of use.The LifeBio Brain app contains a mix of adapted cognitive tests such as clock draw and Trails A, and game-like experiences, presented in a randomized order.We analyzed a white nonhispanic sample (n=51) with a balanced distribution of age [79.6 (7.2) years, range 66-95] and sex (58.82% women).The median SLUMS score of 25, indicates cognitive impairment in most participants.Similarly, the median usability score on the 50-point System Usability Scale was 41.We found that 80% of participants had a usability score of 35 or greater, with a 95% CI of 31-38, and 67% had a usability score of 40 or greater.SLUMS score ≤14 correctly predicted study completion in 90% of participants.Most volunteers from an outpatient geriatrics clinic found LifeBio Brain usable.Volunteers leaving the study early tended to have lower SLUMS Scores.The LifeBio Brain app may have utility for measuring memory and thinking abilities in a white outpatient geriatrics population.

USABILITY TESTING OF THE PACE APP TO SUPPORT FAMILY CAREGIVERS IN MANAGING PAIN FOR PEOPLE WITH DEMENTIA
Nai-Ching Chi 1 , Angela Shanahan 1 , Kristy Nguyen 2 , Ibrahim Demir 1 , Ying-Kai Fu 1 , and Keela Herr 1 , 1. University of Iowa, Iowa City, Iowa, United States, 2.

University of Iowa College of Nursing, Iowa City, Iowa, United States
Pain is a common symptom in older adults with Alzheimer's Disease and Related Dementias (ADRD).It is difficult to assess and is often undertreated in people with ADRD.The PACE-app (Pain Control Enhancement application, was developed to enhance self-efficacy of family caregivers when controlling the pain of their care partner.The objective of this study was to test the usability of the PACE-app with family caregivers and clinicians.We evaluated the usability of the PACE-app.Participants (17 family caregivers, 6 clinicians) took part in a mixed-methods study that included a one-time recorded zoom meeting with standardized semi-structured guided review, interview, and a survey specific to their role.The Post-Study System Usability Questionnaire (PSSUQ) was used to measure usability.The overall PSSUQ score we found was 1.9.The range of scores can be between 1 and 7 with the lower numbers meaning favorable usability.The qualitative interviews showed a favorable user experience with 75% of all participants feeling the overall design was effective; 48% felt the tailored pain management strategies were useful; 24% suggested improving the app by having direct coaching information for the family caregiver.This study demonstrated favorable usability with those who tested the PACE-app.Suggestions for improvement were given and using the interview results in conjunction with the PSSUQ scores, we are able to make changes to the app interface to impact the overall design to enhance user experience.

THE VIRGINIA MEMORY PROJECT: AN INNOVATIVE SERVICE AND EPIDEMIOLOGICAL BRAIN HEALTH REGISTRY Ann
Rhodes 1 , Rachel Coney 2 , and Melicent Miller 3 , 1.